Burden:

that which is carried; load

that which is borne with difficulty; obligation; onus

Living with a chronic illness is a burden. One that is unwelcome and not wanted.

The burdens that accompany chronic illness are exponential, far-reaching, and forever increasing.

But not only do we have to endure such burdens, but we also start to feel like a burden. Notably, a. burden to those closest to us; those forced to face the struggles and annoyances that accompany chronic illness with us. 

"Not only do we have to endure a burden such as chronic illness, but it also makes us feel like a burden." Click To Tweet

A massive chasm exists between independence and dependence. The tsunami-like temperament of chronic illness firmly pushes you onto the side of dependency.  

"A massive chasm exists between independence and dependence. The tsunami-like temperament of chronic illness firmly pushes you onto the side of dependency." Click To Tweet

From Being Burdened To Being a Burden

Living with chronic illness forces you to become dependent on others for everything. From company to entertainment as well as support in everything from attending hospital appointments, preparing food, and even getting around the house.  As the list of what you can no longer do without help becomes longer, it becomes difficult not to feel like a burden.

"Living with chronic illness forces you to become dependent on others for everything. As the list of what you can no longer do without help becomes longer, it becomes difficult not to feel like a burden." Click To Tweet

The severity of the symptoms that I experience as a result of FND has increased my dependency on others.  For instance, the severity of the weakness in my legs, as well as the constant dizziness, means that I am unable to go out alone. And as such, dependent on others to be able to go out into the world. 

I am also unable to stand for very long, leaving me unable to use public transport. I, therefore, have become reliant in particular on my father to drive me everywhere I need to go. The culmination of all the symptoms I experience also makes it challenging to cook or do other household chores without help.  Because of all this, I too, have often felt like a burden on others.  I often feel embarrassed and ashamed that at age 34, I am still in need of so much assistance. 

One Burden of Living With Illness Is That Sometimes People Walk Out

Also, my temperamental brain became unable to tolerate certain places, places with high ceilings, for example. As such, going to the cinema, or going anywhere with a high ceiling is hugely uncomfortable and intolerable for me. Picking venues and situations that I can adjust to, or even tolerate, is a heavy burden.

And one such burden that people have been able to understand or accept, viewing it as a considerable inconvenience.  And one that has resulted in many leaving my life, effectively ghosting or dumping me.  Over time, it has made me more closed off and discouraged about finding love or even meeting someone new. 

Perhaps it is because of this; I am still single. If someone were to date me, and I often question why anyone would, it often feels that a man wouldn’t just be dating me but also the neurological disorder that encompasses my entire existence.  The fear of burdening another person has prevented me from letting anyone close to my heart.  Or even into my life.  This, and the fear of being viewed as a burden by any potential suitors. 

"Perhaps it is because of this; I am still single. If someone were to date me, and I often question why anyone would, it often feels that a man wouldn't just be dating me but also the neurological disorder I live with." Click To Tweet

“Is It OK to Dump Him Because of His Medical Condition?”

In a recent edition of The Ethicist, a weekly advice column by writer Kwame Anthony Appiah, one reader sought advice about their short-term relationship. The reader explained that the person they had been dating has recently disclosed his diagnosis of Crohn’s Disease; an inflammatory bowel disease that can cause life-threatening complications if not cared for correctly. Armed with the knowledge of the illness and its potential complications, the reader goes onto ask if they would be in the wrong to end the relationship. In the letter, they cite that they wish to “shield [themselves] from the pain” if the worse were to happen, or from a future break-up if the partner’s illness became too much to handle.

Appiah replied, “committing to this person may be committing to a life as a caregiver.” And he continued by stating “You don’t owe it to anyone to accept that burden.”

In one advice column – and in the New York Times no less, a prestigious publication seemed to endorse the fears and insecurities of many chronically ill and disabled individuals. That worry that we are a burden and that others see us as such too. 

"In one advice column – and in the New York Times no less, a prestigious publication seemed to endorse the fears and insecurities of many chronically ill and disabled individuals." Click To Tweet

And with these words, the author, Appiah and by association, The New York Times is promoting ableism against both this specific person and other chronically ill and disabled people potentially harmed by such advice. Furthermore, it is ableist to assume that everyone living with a chronic illness, like IBD or disability, is going to need a caregiver in a romantic partner. Many can manage their condition and their lives around it, without any assistance just fine. 

We Are Not Burdens

Living with a chronic illness is a rollercoaster. It includes long periods of being able to manage, followed by hardships, setbacks, and flares. And back round to managing.

In truth, although there are many aspects of our lives that we often need help with, we tightly hold onto any slither of independence we can. For example, I stubbornly refuse help with chores such as changing my bed, or ironing my clothes, often to my detriment.  Our autonomy is more precious to us as our independence becomes something so readily taken from us. 

"In truth, we tightly hold onto any slither of independence we can. Our autonomy is more precious to us as our independence becomes something so readily taken from us." Click To Tweet

The guilt and shame that exudes from chronic illness often whisper lies that I am a burden. But the truth is, that those who love me do not see me as a burden. Those who love you do not recognise you as a burden.  Those who love us simply want to support us in any way they can.  They understand the illness, or disability as part of who we are, but they also appreciate that we are so much more. 

It is not we that are the burden; it is the illness, condition or disability that has happened to us. For it is chronic illness that prohibits us from being self-sufficient and allowing us complete independence. It is the diagnosis we live with that demands a great deal of help and assistance from others.

"It is not we that are the burden; it is the illness, condition or disability that has happened to us. For it is chronic illness that prohibits us from being self-sufficient and allowing us complete independence." Click To Tweet

You Are Not A Burden

I am sure, like me with the words of the New York Times article ringing in your minds, doubt, guilt and wonder creep in, questioning if you are indeed a burden. Let me assure you, that despite the many moments of feeling less than, and the many more of not being able to keep up with the demands of life, you are not a burden.

"Let me assure you, that despite the many moments of feeling less than, and the many more of not being able to keep up with the demands of life, you are not a burden." Click To Tweet

You are so much more than your diagnosis, and far more independent and self-sufficient than you might believe. Don’t accept anything less from anybody than love, understanding and acceptance.

Let us dream of a fairytale romance, with the prince (or princess) of our fantasies, a realist, knowing we are only human and not seeing us as a burden while helping us with the demands of chronic illness that demands help and assistance.